No time today to make this into a formal diary entry, so this is simply a copy of an informal, unedited response I wrote on a politcal emial list on what to me, is a very important topic. (I don’t have the patience anymore, to wait till I can do evrything “perfectly” I guess 🙂
A member there shared this quote: (from an unidentified media source)
“The Bush administration has challenged to Oregon’s
Death with Dignity Act, passed in 1994, allowing terminally ill patients to receive prescriptions for lethal drugs if doctors certify the patients are rational and within six months of death.
My response:
Whew. A topic near and personal for me.
As a nurse, I have seen many many people die over a half century plus of working with the sick and old, literally hundreds and hundreds of them. I know what death looks like in nearly all of it’s forms. I’ve been asked more times than I care to remember, during long nights sitting beside suffering, dying patients, in hospitals and nursing homes, to help them die. I never had the courage to comply. I will forever be grateful to that one couragous nurse , who, 35 years ago, WAS brave enough to help me help my husband ease on out, when no one else would and when he was begging for his certain end now, not later, and it was still weeks off suffering away from happening naturally.
I no longer am as well prepared to exercise own choice to decide the time of my death, as I was once: the right medications I had collected in my nursing days are now expired in usefullness, and I have no way to get more of them. that I know of, (yet. I am still searching) I have other alternatives as well. If I should ever get some condition that means I will decline and die in excruciating pain, or in some irreversible state of cognitive deterioration, I promise all that I WILL leave on my own terms, with or without help form anyone else. This is MY body, MY mind, MY choice, MY death, and no one else has any goddamned right to decide this for me, as long as I am lucid. ( As far as I know, the law and the government have not yet discovered a way to procecute people after they are dead, so to hell with my actions (regarding my own body) being ‘illegal” in the eyes of the law.
In order to insure this right to decide the time and means of my own death, means (to me and for me only: I will only speak for myself and my own wishes and plans and will not offer any advice to others).. staying the hell out of hospitals, nursing homes, and the direct control of the medical profession, who quickly assumes the right to take choice away, more often that you can possibly imagine, in ways that are not nearly as dramatic as CPR or intubation. The heart and lungs can keep on working just fine after the thinking brain is all but gone, as long as the vital survival centers remain intact.)
Witness, as I have, unit after in nursing homes after nursing home, filled with Teri Shiavos of all ages who are no longer “here” in any way but physcially, kept alive (for many many years, if they are young and otherwise healthy) , via tube feedings and antibiotic treatment and nursing care.
Multiple that by nursing homes across the country. Try to convince me that, if they could sit up and talk to us, the majority would choose to exist like this: abjectly dependent 24/7 on whoever is on duty among the low paid front line nurses aids that turn over faster that leaves in autumn, and draw all too often, the least among us, as well as the best among us, into that line of work.
This is how it is because of a) fear of legal liability issues involved in discontinuing nutritional support and antibiotic treatment ) b) no involved or informed family,b) no living wills or health care directives, c) no one who dares to step forward and advocate for them d) power mongering politicians who believe goverment should have control of what we do or don’t do with our own bodies. and e) cointinued medical advances in the prolongation of life.
This is my own private life/death choice. I would not ask any relative to do this for me because if I’m brain dead I won’t know what is happens to my body anyway. I would not ever presume to make this decision for anyone else no matter how close we are, so have made sure I DO know the wishes of my loved ones, and hopefully, they all have tended to their own health care directives also, and whatever they wish, I would advocate for, for them, if I am next of kin.
I am grateful to be retired from nursing now, where I am no longer struggling with this issue every day and having to witness so much unnecessary suffering.
I can suggest, strongly, that everyone make sure to have a legal Health Care Directive (**one that is considered legal in your state, because requirements vary ) that addresses not only the typical emergency lifesaving measures like cardiopulmonary resustation, but also what you wishes are, in the case of irreversible brain damage in an otherwise finctioning body. Basic area’s it’s wise to be very specific about are
1) Respiratory supports (breathing machines / tubes to help you keep breathing if you are having trouble breathing or are already intubated)
2 Nutritional support. (tube feedings)
3) Antibiotic treatment (to treat infections)
Note: a typical DNR order..(Do Not Resusitate)..ONLY covers you when you heart or lungs stop suddenly, and ONLY means they can’t do CPR then, or stick tubes down your breathing passages to bring you back from that particular cardiac or respiratory arrest incident.
If you should get resusitated anyway, (as paramedics often do in the home, or in emergency situations, because they are legally required to (here at least,) and if there is no clear, signed and legal health directive they can put their hands on at that very moment of arrest)….and if it has been more than six to ten minutes or so that your brain has gone without oxygen…you could very well end up like Shiavo did. So having a tight, legal, readily available Healh care Directive is a very smart idea for everyone, no matter how young and healthy they are.
ONward
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Thank you Scribe, for at least not unthinkingly dismissing the pleas of those you helped treat and for the simple humanity you show.
A couple of deaths by euthenasia have been shown on TV here, including one in the Netherlands where the entire process was shown. The safeguards are in place in the law to ensure that the patient gives informed consent. I believe the statistics show that patients chosing this option actually live longer, knowing that they can end their suffering when they chose, than those who see no end to their agonies.
One thing I would advise people who are campaigning on this to to is to ensure that it is part of a joint program of assisted dying and pain relief. The hospice movement has made progress on pain management balancing it with consiousness levels. Even they have no universal panacea and although their care must be an option, so should a speedier option.
In my opinion, there is no absolutely NO excuse for people suffering severe, ongoing pain such as cancer pain, without adequate pain control being readily avaiable to them, rich OR poor, in this supposedly advanced and humane society. We have the knowlege with which to sucessfully offer this in almost all cases now and the drugs to do it with. Yet this remains an area of relief only available to a minority of people who need it, and certianly is NOT available to most low income/poor people who end up in todays long term care settings.
All I had to offer the dying was my touch and my presence. In return, they gave me so much more, because there is no more intimate life connection that the one we can share with someone who is leaving theirs.
Thank you for eloquently stating the problem. Though I’m not a nurse, I worked for the chair of internal medicine in a medical school for 20 years. I’ve known hundreds, if not thousands, of doctors in all stages of their careers. They don’t scare me a bit!
I’m a caregiver for my 86 y/o demented Mama, who remains one of the kindest, sweetest people I’ve ever known. When she broke her hip a year ago, the orthopedic surgeon refused to give me a prognosis or describe the usual course of post-op treatment! I took him out in the hall and ripped him a new one. Doctors in my small town are not used to that!
When I found out that they routinely keep elders in rehab for three months I got her the hell out of there. The rehab unit, which is attached to the hospital, is privately owned (probably by the orthopods, though I haven’t been able to check it out).
We had been to the lawyer and gotten a detailed health care power of attorney. With that document, I was able to get her out in a week. They didn’t even want the number of the psychiatrist in a larger city nearby who was treating her for dementia and depression. In fact, I’m sure they were quite happy to be rid of me.
But they would have kept her there, frightened and confused, to get Medicare money. They same thing happened a few years earlier when my father, 82, had class IV CHF and the doctor would not put a DNR order on his chart. We took him home.
For us, home health — which Medicare also pays for — and Hospice with my dad, were outstanding! My father died in his sleep peacefully at home, and my mom and I are enjoying living in our own home without a bunch of strangers running in and out unexpectedly.
This week we went to see our internist, one of the best I’ve known, and she urged me (again) to have a base-line colonoscopy. I’m uninsured and don’t intend to have cancer treated in the conventional ways if I should develop it. It hit me like a ton of bricks, though, because a couple of weeks before I’d taken a dear friend to the VA for a colonoscopy. He’s quite ill, and it was brutal for him.
But at least that VA is accredited by the JCAHO. After my mother’s hospitalization, I learned that our local hospital is one of the 20% who are not commited to “continuous quality improvement.” They are in it for the money. Period. The difference in the VA and my local hospital was remarkable! All the staff, including physicians, were respectful and courteous: They called my friend Mr. Friend, compared to the local hospital where the aid said to my mom, “Oh, you poor thing, having to take all these medicines.”
I am totally with you. As much as possible, I believe in “staying the hell out of hospitals, nursing homes, and the direct control of the medical profession.” And there’s always the Hemlock Society.
Enough from me. I could go on and on.
Thank you for raising this important point. The religious right wants to define life! I think it was Ben Johnson who wrote: “But a man’s reach must exceed his grasp, or what’s a Heaven for?” May the religious right find their Heaven. Soon.
Cotter, your parents are SOOOOO fortunate to have had and to have YOU!!
The reality is, from my observation, that since medicine has become a pROfit baking business, the prioities have slowly but surely shifted away from patient centered care toward profit centered care. an
I was one a respectd member of professional medical team who truly did place the well being of patients at the top of the priority list.
When I retired, I had somehow become part of the overhead expenses involved in running a business dedicated to promoting efficient “delivery of service” cost cutting, and keeping stockholders happy, by serving e more people in a shorter time than ever before, with the least amount of overhead.
Sounds like we were working about the same time. I remember when medicine became health care and hospitals became medical centers. Both broadened the market of medicine. When I first started working at the medical school in 1975, the business people were mostly BAs. In St. Louis, the MBAs came in droves in the early eighties. HMOs started about the same time, and the MBAs started hiring doctors. “We own him,” one liked to say. (Gag!) The school lost several chairmen, who retired early because the atmosphere was so greedy. This business model wasn’t their cup of tea.
Also sounds like I knew some nurses like you, working with teams of other professionals, took excellent care of patients. Later, with my parents’ illnesses, I realized that nurses do most of the patient care! Many, many nurses saw us through some times that were hard for us.
I guess that’s what they mean when they say “good old days.” I’m so glad I still have some “informed consumer” in me. I saw my mom and dad take care of one person after another at the end of their lives. I had the privilege of helping my dearest aunt in her six weeks. No job is perfect, but caregiving for sustenance isn’t a bad one! If I were being paid, it wouldn’t be nearly as enjoyable.
Few people understand the situation.
Thanks again for the diary. It’s nice to know someone else sees things in a similar light.